Type 1, 2 or LADA?

[George775]

I'm newly diagnosed with type 2, diagnosed with prediabetes for about 10 years. I've managed blood sugars in the past with exercise and diet. Which I'm still doing, only now my diet consists of little to no sugars and about 100g to 150g carbs per day. I've not been much for junk food beyond the odd bar of chocolate here and there. I got the Libre 3 system about a month ago which has been an immense help in tracking my sugars in near real time.

I'm hoping to gain more information on which type of diabetes I have as I feel type 2 might not be the correct type. I've never been over weight I know type 2's can also be lean., I've not excessively abused sugars, I work out about 5 times per week and have done so since my late 20's. My blood sugars per the libre are stable most of the time apart from when I sleep, they (on and off) will plummet to around 55 mg/dl 3.1mmol/L and the alarm will wake me up usually around 3am. Funny enough pre libre that's when I'd wake up to pee anyway. Anytime I'm at the gym, just walking on a treadmill about 15 minutes in I'll be below 60 or 3.3 and have to stop. I'm not trying to eat something mid walk before things plunge. I usually start out with weights as I know the treadmill will wear me down too fast.

Before I had the libre if I was working out or working in the yard I'd feel tired. I thought, I'm tired but I'd be shaking, mildly confused and very tired. I'd usually eat a protein bar or something and that would pick me up again if that didn't work I'd eat a bite of chocolate then resume my activities. Once in while in the mornings pre libre I'd wake up the same way usually sweating and shaky I'd eat and half an hour later feel much better.

My intention is to return to my doctor and request a test for type 1 antibodies just to confirm for sure if I'm type 1, 1.5 or type 2. I'm still just a few weeks in with a diagnosis and using the libre so any advice would be most welcome. I'm not on any medications at least not yet. I'm about 96% of the time in range with a strict diet and exercise.

 

[In Response]

Sorry to read about your troubles.
However, I am concerned your Libre may be misleading you, especially at night. If you are managing your diabetes through diet alone, a hypo of 3.1 is unlikely at night. Do you feel hypo and do youcheck this with a finger? I suspect a compression low (pressure on the sensor when you lie on your sensor causing a lack of interstitial fluid to the filament resulting in a false low) rather than a real low. Furthermore, if you had Type 1 or LADA (which is another name for slow onset Type 1 for adults) this would cause high BG , not a lie).
My recommendation is to follow Abbot’s advice and check unexpected readings from your Libre with a finger prick.

 

[MarthaD]

I'm newly diagnosed with type 2, diagnosed with prediabetes for about 10 years. I've managed blood sugars in the past with exercise and diet. Which I'm still doing, only now my diet consists of little to no sugars and about 100g to 150g carbs per day. I've not been much for junk food beyond the odd bar of chocolate here and there. I got the Libre 3 system about a month ago which has been an immense help in tracking my sugars in near real time.

I'm hoping to gain more information on which type of diabetes I have as I feel type 2 might not be the correct type. I've never been over weight I know type 2's can also be lean., I've not excessively abused sugars, I work out about 5 times per week and have done so since my late 20's. My blood sugars per the libre are stable most of the time apart from when I sleep, they (on and off) will plummet to around 55 mg/dl 3.1mmol/L and the alarm will wake me up usually around 3am. Funny enough pre libre that's when I'd wake up to pee anyway. Anytime I'm at the gym, just walking on a treadmill about 15 minutes in I'll be below 60 or 3.3 and have to stop. I'm not trying to eat something mid walk before things plunge. I usually start out with weights as I know the treadmill will wear me down too fast.

Before I had the libre if I was working out or working in the yard I'd feel tired. I thought, I'm tired but I'd be shaking, mildly confused and very tired. I'd usually eat a protein bar or something and that would pick me up again if that didn't work I'd eat a bite of chocolate then resume my activities. Once in while in the mornings pre libre I'd wake up the same way usually sweating and shaky I'd eat and half an hour later feel much better.

My intention is to return to my doctor and request a test for type 1 antibodies just to confirm for sure if I'm type 1, 1.5 or type 2. I'm still just a few weeks in with a diagnosis and using the libre so any advice would be most welcome. I'm not on any medications at least not yet. I'm about 96% of the time in range with a strict diet and exercise.

Hi there. I'm in a very similar position to you, but a bit further down the line. Was diagnosed with type 2 over 18 months ago. I've a low BMI and generally eat a lowish carb diet, so was very surprised when I was diagnosed. I, too, was prediabetic for a few years. I often get hypos during exercise and at night (also around 3am!) and have confirmed these with finger pricks. I've very recently seen an endocrinologist ( I had to push for it), and I'm currently undergoing tests for both LADA and reactive hypoglycemia. The endocrinologist doesn't believe I've type 2, and he has been very sympathetic. My advice is to get a referral. I have more tests coming up in March so I'll keep you posted!

 

[Melgar]

Same! BMI of 19. Very fit and exercise every day. I don't have insulin resistance. I get hypos, yes at 3am and sometimes after exercise. Saying that I moved some wood today and my blood sugars shot up to 15mmol/s and I hadn't eaten for 5 hours. My blood sugars are unstable. My baseline sugars can be 7mmol/ls for several weeks and then my baseline sugars drop for no reason to around 4 mmols and then I know I,m going to get hypos. They are not as frequent at they were. I wonder whether my pancreas is moody. Funny how blood sugars always really drop at 3am and then the rise begins to around 8 mmol/s by 6am. 3am seems to be the witching hour. I have finger pricked if I can catch the low and yes my sugars are genuinly low. They are not reactive lows either. I know the difference. My C-peptides are on the low end of normal. They are undecided as to whether I have autoimmune diabetes or not. I already have one autoimmune condition and my brother has LADA and is on insulin. My had mother RA. No type 2 in my family. They say 10% of diagnosed type 2's are actually being misdiagnosed and are actually type 1'.. They seem to base their diagnosis on age of onset and because 90% of diabetics are Type 2 therefore you must be one too.

 

[MarthaD]

It's quite reassuring to find people in the same position. My endo says he hasn't come across anyone like me before!! My c-peptide is also on the low end of normal. MODY ruled out, so hopefully getting closer to a proper diagnosis.

 

[George775]

Sorry to read about your troubles.
However, I am concerned your Libre may be misleading you, especially at night. If you are managing your diabetes through diet alone, a hypo of 3.1 is unlikely at night. Do you feel hypo and do youcheck this with a finger? I suspect a compression low (pressure on the sensor when you lie on your sensor causing a lack of interstitial fluid to the filament resulting in a false low) rather than a real low. Furthermore, if you had Type 1 or LADA (which is another name for slow onset Type 1 for adults) this would cause high BG , not a lie).
My recommendation is to follow Abbot’s advice and check unexpected readings from your Libre with a finger prick.

I wish it was a misreading and I've had a few in the past. I don't typically sleep on my side, I usually basically die face down then spring awake at 3am like some kind of vampire. The strange thing is I don't usually feel low even when working out. If I've been low for a while then yes I get all the effects. Yesterday I was walking 10 minutes in and my sugars drop like a rock. 20 minutes in and the low glucose alarm is going off. I get home and a while later I'm out in the yard working for about 3 hours, blood sugar is stable. I even had a few beers last night and it's still stable this morning. I can check again with more finger pricks.

 

[George775]

I'm glad I'm not some kind of unicorn and there are others out there as confused as I am. I'm totally fine with a type 2 diagnosis but I find it strange and hate the thought of statistics alone being the determining factor. I'm still only a few weeks in using the Libre and trying to gather as much data as possible backed up by finger pricks. I'm logging everything I eat using an app, I log what I do and when on the Libre app too so I have some type of reference hopefully there'll be some type of pattern. I feel confident returning to the doctor with some solid data will help her understand better what's going on. I'm honestly half expecting a referral. I had no idea what a low was until I got the Libre. I shrugged it off as being tired from working too hard even though I didn't feel like I was working that hard.

I have no idea what my c-peptide is, do either of you have a low resting heart rate. That was mentioned by a previous doctor totally unrelated to the type 2 diagnosis. They thought my resting heart rate in the high 40's or low 50's in the morning was too low. Blood pressure is normal or text book as my old doc used to say. I've checked both my smart watch and bp monitor with the doctors readings while in their office to ensure they are both reasonably accurate.

 

[MarthaD]

I don't have a low heart rate, but do have low blood pressure. Generally about 96/65...

 

[Melgar]

My usual resting heart rate is around 65 bpm and it has recently been as low as 50 bpm. I do tax my heart with some pretty steep mountain hikes, my heart can spend 10 - 20 minutes at peak range and a couple of hours in cardio on some hikes. I live very close to the amazing coastal mountains in British Columbia, so mountain trails and skiing galore. My blood pressure can go on the low end, it can also edge into the high range so I do take a minimal dose of blood pressure meds. I inherited a propensity for high blood pressure from my mother. She had dangerously high blood pressure and was obese due to her having RA, but here is the thing despite her size and inability to move she didn't have T2. My C-Reactive Proteins (CRP) are low at 1.9 m/gL well below the 5 m/gL lab cut off for being out of range. I believe a high CRP is indicative of systemic inflammation and that is associated with metabolic issues associated with T2. If I have that wrong please correct me. My trigs are normal.

I too didn't know I was having hypos either until I started using cgms. I would wake up, usually around 3am after having nightmares. My heart would be racing, I would be highly anxious and damp with sweat. I thought the nightmares were associated with stress. It wasn't until I started wearing a cgm that I saw my blood sugars were actually dropping very low. They would stay low and register on my cgm stats. They came in swarms. My Dr ordered tests and that is how I know my C-peptides. On the advice of my medical team I have a carby drink before I sleep and before exercise. That worked. They still come but far less frequently and not as low. They do not know why I have them, but their fix worked. I suspect it's due to me having Coeliac disease but who knows. It may having nothing to do with it.

My understanding is LADA can take years to develop. How fast you go on insulin depends on the type of antibodies your body is producing. Again correct me if I am wrong. In my case at least they have acknowledged I may have autoimmune diabetes and not T2. It matters because of the type of blood lowering meds they put you on. It also matters because it is frustrating when you go on super low carb diets and it makes no difference or very little difference to your blood sugars when everyone else is having great success with it. I was talking about non diabetic meds in another post. I am taking Bupropian off label for ADHD. Bupropian apparently inhibits KATP channels in your pancreas, inducing insulin secretion in relatively high concentrations (National Library of Medicine). Bupropian has definitely had an impact on my blood sugars and lowered them in not a small way. I have to be super careful about Hypos. I have increased my carb intake to counter the effect. I am clearly very sensitive to insulin.

Sorry, I have gone on and on and probably sound a bit nerdy.

 

[KennyA]

I also get the sudden drop in BG in the early hours. With me it's usually somewhere between 3 and 5 am.

I first noticed it about ten years ago - nightmares, very heavy night sweats, and waking. Still get it, even with A1c results being normal for four years now, so I don't think it's triggered by high blood glucose (for me anyway). I know other people - who are not diabetic - who have the same sweats/nightmares experience and get the same sort of low Libre readings.

I get the thing about compression lows but the point is that the sweats/nightmares happen, and the "lows" happen at the same time. No sweats, no lows.

I did not realise at all that it had an impact on BG levels until I tried a Libre in 2021. It was a bit of a surprise to find that the night sweats etc correlated with a steep fall in BG into low 3s (according to the Libre), followed by a steady rise that seems (in my case) to be the beginnings of, and lead into, dawn phenomenon. It doesn't happen all the time, but I can't identify anything that might be triggering it. I've never been able to catch it with a fingerprick test, and I've never done anything about the low - my liver takes care of that.

 

[Melgar]

These lows maybe very common. And with the rising use of cgms more and more of us are seeing different blood sugar patterns. Mine follow a general lowering of my overall blood sugar. Like my pancreas suddenly decides to churn out more insulin and my baseline blood sugar drops to 4mmol/Ls. That is when I get the hypos for several days. It then rises again to my usual baseline blood sugars of around 6 mmol/ls to 7 mmol/ls. I sound obsessive and maybe I am. I have an inquisitive mind. I picture a moody pancreas that causes unstable blood sugars.

 

[Lamont D]

I'm newly diagnosed with type 2, diagnosed with prediabetes for about 10 years. I've managed blood sugars in the past with exercise and diet. Which I'm still doing, only now my diet consists of little to no sugars and about 100g to 150g carbs per day. I've not been much for junk food beyond the odd bar of chocolate here and there. I got the Libre 3 system about a month ago which has been an immense help in tracking my sugars in near real time.

I'm hoping to gain more information on which type of diabetes I have as I feel type 2 might not be the correct type. I've never been over weight I know type 2's can also be lean., I've not excessively abused sugars, I work out about 5 times per week and have done so since my late 20's. My blood sugars per the libre are stable most of the time apart from when I sleep, they (on and off) will plummet to around 55 mg/dl 3.1mmol/L and the alarm will wake me up usually around 3am. Funny enough pre libre that's when I'd wake up to pee anyway. Anytime I'm at the gym, just walking on a treadmill about 15 minutes in I'll be below 60 or 3.3 and have to stop. I'm not trying to eat something mid walk before things plunge. I usually start out with weights as I know the treadmill will wear me down too fast.

Before I had the libre if I was working out or working in the yard I'd feel tired. I thought, I'm tired but I'd be shaking, mildly confused and very tired. I'd usually eat a protein bar or something and that would pick me up again if that didn't work I'd eat a bite of chocolate then resume my activities. Once in while in the mornings pre libre I'd wake up the same way usually sweating and shaky I'd eat and half an hour later feel much better.

My intention is to return to my doctor and request a test for type 1 antibodies just to confirm for sure if I'm type 1, 1.5 or type 2. I'm still just a few weeks in with a diagnosis and using the libre so any advice would be most welcome. I'm not on any medications at least not yet. I'm about 96% of the time in range with a strict diet and exercise.

You definitely need a referral.
It does sound a metabolic condition, which I'm not sure, but possibly a type of non diabetic condition.
You need the diagnostic tests that only a specialist can give you.

I would believe that autoimmune disorders should have shown up in your blood panel results whilst hba1c levels are tested.

 

[Melgar]

You definitely need a referral.
It does sound a metabolic condition, which I'm not sure, but possibly a type of non diabetic condition.
You need the diagnostic tests that only a specialist can give you.

I would believe that autoimmune disorders should have shown up in your blood panel results whilst hba1c levels are tested.

Lamont D, I don't think antibody tests are done routinely with a panel. They are very costly. In Canada the Drs have to meet a certain criteria before antibody tests are done, for instance, very high blood sugars with an eventual failure of 1st line blood sugar lowering medications. It's all about cost effectiveness. Then they will test. It is probably the same in the NHS. There is a debate around testing those deemed at risk of auto-immune disorders for diabetes, but again it is about cost.

 

[Antje77]

Lamont D, I don't think antibody tests are done routinely with a panel. They are very costly. In Canada the Drs have to meet a certain criteria before antibody tests are done, for instance, very high blood sugars with an eventual failure of 1st line blood sugar lowering medications. It's all about cost effectiveness. Then they will test. It is probably the same in the NHS. There is a debate around testing those deemed at risk of auto-immune disorders for diabetes, but again it is about cost.

And even if they are tested, a negative result is inconclusive.

 

[Lamont D]

Lamont D, I don't think antibody tests are done routinely with a panel. They are very costly. In Canada the Drs have to meet a certain criteria before antibody tests are done, for instance, very high blood sugars with an eventual failure of 1st line blood sugar lowering medications. It's all about cost effectiveness. Then they will test. It is probably the same in the NHS. There is a debate around testing those deemed at risk of auto-immune disorders for diabetes, but again it is about cost.

Hence, the referral for more tests and the symptoms should alert the doctor to the possibility.
it always comes down to money.

 

[Melgar]

And even if they are tested, a negative result is inconclusive.

Absolutely, and there are 4 antibodies types associated with the development of T1DM / LADA, islet cell autoantibodies (ICA), antibodies to insulin (IAA), glutamic acid decarboxylase (GAA or GAD) and protein tyrosine phosphatase (IA2 or ICA512)Plus be predisposed with the genetic marker HLA DR3/DR4.

 

[Melgar]

Hence, the referral for more tests and the symptoms should alert the doctor to the possibility.
it always comes down to money.

You are not wrong there.

 

[gogobroom]

I'm glad I'm not some kind of unicorn and there are others out there as confused as I am. I'm totally fine with a type 2 diagnosis but I find it strange and hate the thought of statistics alone being the determining factor. I'm still only a few weeks in using the Libre and trying to gather as much data as possible backed up by finger pricks. I'm logging everything I eat using an app, I log what I do and when on the Libre app too so I have some type of reference hopefully there'll be some type of pattern. I feel confident returning to the doctor with some solid data will help her understand better what's going on. I'm honestly half expecting a referral. I had no idea what a low was until I got the Libre. I shrugged it off as being tired from working too hard even though I didn't feel like I was working that hard.

I have no idea what my c-peptide is, do either of you have a low resting heart rate. That was mentioned by a previous doctor totally unrelated to the type 2 diagnosis. They thought my resting heart rate in the high 40's or low 50's in the morning was too low. Blood pressure is normal or text book as my old doc used to say. I've checked both my smart watch and bp monitor with the doctors readings while in their office to ensure they are both reasonably accurate.

I don't think resting Hr has much to do with it ... my RHR is around 39 but I am athletic and endurance fit - Docs always question it but its just low, 40's or 50's isn't that low - depending in if you have any issues heart related. I would push for a referral if you can, but with the NHS it appears that they are stuck on a certain pathway and if you haven't got all the red flags then its just a wait and see until it gets worse. I have gone down the private route and hopefully getting some tests done in the coming weeks with regards to antibodies, further c peptide, insulin etc.

 

[Melgar]

I don't think resting Hr has much to do with it ... my RHR is around 39 but I am athletic and endurance fit - Docs always question it but its just low, 40's or 50's isn't that low - depending in if you have any issues heart related. I would push for a referral if you can, but with the NHS it appears that they are stuck on a certain pathway and if you haven't got all the red flags then its just a wait and see until it gets worse. I have gone down the private route and hopefully getting some tests done in the coming weeks with regards to antibodies, further c peptide, insulin etc.

I don't think my RHR has ever been that low even when I was a competitive distance runner in full on training.

 

[George775]

Thanks for all the responses this has been interesting and I appreciate all the valuable information and everyone sharing. I do intend to get a referral, antibody test was not performed that I can see in any of my blood work. My HbA1c has never been above 6.4, that was after a holiday and indulging at Christmas. It's usually hovering around 5.9 to 6.2. I've been reading and reading trying to figure this out. Something is off and I'm sure another doc will figure it out. I'm quite curious as to what.

Another visit to the gym today and once again on the treadmill just walking, not even jogging and my blood sugar drops like a rock after 10 minutes walking. 20 minutes in and it's either time to stop or eat something with carbs. Outside again in the garden after the gym working fairly hard and blood sugar is stable. All that I know for certain so far is walking will drop my blood sugar quickly and it'll just keep going down until I stop walking then it climbs back into the normal range.